visionof-lumen

[visionof-lumen]

"would you still love me if I was a worm" is OUT, "would you still love me if I was reborn a fundamentally different person from the ground up but still remembered you and longed for what we had" is IN

🪱

[visionof-lumen]

this is how i know sebastian isnt the one struggling on krita right now. first picture he drew a week ago while BORED, second one i drew just now . i spent about an HOUR AND A HALF on the one i did btw . and i referenced his !!. i think hes just better than me 😭 damn

context both were made for our aac device. the one he made was for his name in our sys board & i wanted to surprise him w a yes/no set for the home board [ <- havent done the disapproval one yet . too exhausted from the first one ]

[visionof-lumen]

moodboard for our seb !! we've never done one of these b4 haha . kinda smashed everything together that had the correct colors 😅

[visionof-lumen]

nausea getting worse. legs getting worse. migraines getting worse. WHEN WILL IT END

[ nasty unsanitary descriptions under the cut. also just a bit of vent talk in general ]

woke up around 2am last night, immediately gagged and ran to the bathroom. proceeded to gag and spit into the toilet for a half hour. couldnt even yell for our parents because we had no breaks between the dry heaving. it felt like we couldnt breathe it was so bad

surprisingly, it didnt come with a migraine! it felt like we had a hydraulic press coming down on our skull, but no pain. after the half hour we felt a LOT better and managed to go back to our room to sleep.

we woke up a few other times because of leg pain, but thats nothing new. two days ago we couldnt sleep because of it, we were tossing and turning almost crying because it hurt so bad.

we've started taking notes when the more severe bits hit because we're gonna see a specialist at some point and i want it written down for them to read.

[visionof-lumen]

managed to improve the main folder, completed the items folder, & added the important phrases !!! these screenshots were from our laptop [ a lot easier to edit boards from there ]

could have probably added a few more warning phrases [ completely forgot abt vultures haha ] but i am tired </3

started working on our coughdrop rw boards, we'll eventually add important phrases for playing it in action . but for now we're trying to add all the items & creatures for more specific & slow discussion [ for when not playing the game ]

also context : the custom bright colors are just for blocking out the big sections so its easier to go "hmm what color was this word.. oh it was green!!" so then we look in the green section. no strict categories per color. we were uhh a bit Lazy with the yellow area, given that we dont talk abt those ones too often in discussions , & if we made them all diff colors it makes it kinda harder to look through them [ we tried haha ]

all we've got is these two. just finished the creatures folder, most of the transparent ones were gifs taken from the miraheze wiki 👍

[visionof-lumen]

started working on our coughdrop rw boards, we'll eventually add important phrases for playing it in action . but for now we're trying to add all the items & creatures for more specific & slow discussion [ for when not playing the game ]

also context : the custom bright colors are just for blocking out the big sections so its easier to go "hmm what color was this word.. oh it was green!!" so then we look in the green section. no strict categories per color. we were uhh a bit Lazy with the yellow area, given that we dont talk abt those ones too often in discussions , & if we made them all diff colors it makes it kinda harder to look through them [ we tried haha ]

all we've got is these two. just finished the creatures folder, most of the transparent ones were gifs taken from the miraheze wiki 👍

[visionof-lumen]

our mom is starting to look . really sad when we express our pain. but i mean what else are we supposed to do. it fucking HURTS we cant stop our face from grimacing or going quiet because its so bad we feel like we're gonna throw up

took 500mg aleve & 500mg Tylenol for a migraine last night (only had aleve available because our doctor prescribed it. he told us not to take ibuprofen) and it took 5 fucking hours for them to START to kick in . was sweating & nauseous trying not to blink or close our eyes or breathe or make any movements (nothing helped). but we were in our moms room because she wanted to keep an eye on us in case we started to actually throw up (it peaked at around 6pm , then stayed about the same intensity until 9pm when the meds kicked in. didnt throw up though yay)

so.. we're gonna have to set up another appointment to see the doctor who prescribed the aleve because it just isnt helping. and neither is anything else (ibuprofen has the same effect, takes a few hours to start up).

also been waking up shaking in the middle of the night because our lower body starts burning like we're on fire . HELL on EARTH

[visionof-lumen]

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Wheelchair and other Mobility Aid Stimboard

PT: Wheelchair and other Mobility Aid Stimboard

Not requested

My disability may be worsening, but I'm glad that so many have been so proud with their use of wheelchairs and other mobility aids. It gives me the confidence to advocate for what I need. I love you disability community.

Credits: x x x | x x x | x x x

[visionof-lumen]

I've been disabled for almost 29 years. Here's what I've learned.

Tablets sink and capsules float. Separate out your tablets and capsules when you go to take them. Tip your head down when taking capsules and up when taking tablets. Liquigels don't matter, they kinda stay in the middle of whatever liquid is in your mouth.

If your pill tastes bad, coat it with a bit of butter or margarine. I learned this from my mom, who learned it from a pharmacist.

Being in pain every day isn't normal. Average people experience pain during exceptional moments, like when they stub their toe or jam their finger in a door, not when they sit cross-legged.

Make a medical binder. Make multiple medical binders. I have a small one that comes with me to appointments and two big ones that stay at home, one with old stuff and one with more recent stuff.

Find your icons. Some of mine include Daya Betty (drag queen with diabetes), Stef Sanjati (influencer with Waardenburg syndrome and ADHD), and Hank Green (guy with ulcerative colitis who... does a bunch of stuff). They don't have to be disabled in the same way as you. They don't even have to be real people. Put their pictures up somewhere if you want; I've been meaning to decorate my medical binders with pictures of my icons.

Take a bin, box, bag, basket, whatever and fill it with items to cope with. This can be stuff for mentally coping like colouring books or play clay or stuff for physically coping like pain medicine or physio tape.

Decorate your shit! My cane for at home has a plushie backpack clip hanging from the end of the handle and my cane for going places is covered in stickers. All of my medical binders have fun scrapbooking paper on the outside. Sometimes, I put stickers and washi tape on my inhalers and pill bottles. I used my Cricut to decorate my coping bin with quotes from my icons, like "I've seen enough of Ba Sing Se" and "I need you to be angrier with that bell".

If a flare-up is making you unable to eat or keep food down, consider going to the ER. A pharmacist once told me that since my eye flares can make me so nauseous that I cannot eat, then I need to go to the hospital when that happens.

Cola works wonders for nausea. I have mini cans of Diet Pepsi in my coping bin.

Shortbread is one of the only things I can eat when nauseous. Giant Tiger sells individually-wrapped servings of shortbread around Christmas or the British import store sells them year-round. I also keep these in my coping bin.

Unless it violates a pain contract or something, don't be afraid to go behind your doctor's back to get something they are refusing you. I got my cardiologist referral by getting in with a different NP at my primary care clinic than who I usually saw. I switched from Seroquel to Abilify by visiting a walk-in.

If you have a condition affecting your abdomen in some way (GI issues, reproductive problems, y'know) then invest in track pants that are too big. I bought some for my laparoscopy over a year ago and they've been handy for pelvic pain days, too. I've also heard loose pants are good for after colonoscopies.

Do whatever works, even if it's weird. I've sat on the floor of the Eaton Centre to take my pills. I've shoved heating pads down my front waistband to reach my uterus.

High-top Converse are good for weak ankles. I almost exclusively wear them.

You can reuse your pill bottles for stuff. I use my jumbo ones to store makeup sponges and my long skinny ones to hold a travel-size amount of Q-Tips.

Just because your diagnostics come back with nothing, it doesn't mean nothing is wrong. Maybe you were checking the wrong thing, or the diagnostic tool wasn't sensitive enough. I have bradycardia episodes even though multiple cardiac tests caught nothing. I probably have endometriosis even though my gynecologist didn't see anything.

You can bring your comfort item to appointments, and it's generally a green flag when someone talks to you about it. I brought a Squishmallow turkey (named Ulana) to my laparoscopy and they had her wearing my mask when I woke up. I brought a Build-A-Bear cat (named Blinx) to another procedure and a nurse told me that everyone in the hall on the way to the procedure room saw him and were talking about how cute he was. Both of those ended up being positive experiences and every person who talked to me about my plushies was nice to me. If you don't feel comfortable having it visible to your provider during the appointment, you can hide it in your bag and just know it's there, or if you're in a video appointment, you can hold it below frame in your lap.

Get a small bucket, fill it with stuff, and stick it in your bed (if you have room for it). I filled a bucket with Ensure, juice boxes, oatmeal bars, lotion, my rescue inhaler, etc. in October 2023 in anticipation of my laparoscopy and I still have it in my bed as of January 2025.

If your disability impacts your impulse control (e.g. ADHD, bipolar disorder), you should consider setting limits around your spending -- no more than X dollars at a time, nothing online unless it's absolutely necessary, and so on. Or, run these purchases by someone you trust before committing to them; I use my BFF groupchat to help talk sense into myself when I buy stuff.

Feel free to add on what you've learned about disability!

[visionof-lumen]

screamed after getting our hip xray results back . we likely have bilateral hip dysplasia ! soooo both sides of our hip bone has teenie tiny sockets to place the thigh bone into. causes a shit ton of pain, possible future surgeries, & dislocations 👍 absolutely fucking fantastic /sarcasm .

uhm rest is under the cut bcuz yay rant

they didnt specify the exact degree that the angle is at, but its less than 25 , and our left hip has a significantly smaller degree/is Worse than the right hip. which makes sense considering we get more pain & "popping" feelings from the left. idk how to explain the popping but its like a subluxation? it feels like the bone is out of place & it HURTS but we can pop it back into place pretty easily [ so we just. throw our leg forward into a completely straight position & pray it doesnt hurt too much ], if thats not possible we just try not to scream in pain as we move the bone around enough in the socket so it pops back without straightening our leg. yeeouch

but hey . at least it didnt take that long to get a chance at a DX ? also bonus fact, our primary doctor also heard about our pain in our legs & lower back and immediately said "yeah that sounds like chronic pain" and ordered the xray for our hips within the same 5 minutes of bringing it up. they said if the hip xray didnt explain the pain in our knees & ankles theyd also order one of those too !!

anyway, i hope they respond to the results soon . i hope we get some answers on what to do & how to help NOT feel like shit all the time [ usually takes a few days to get our doctor to see the results, we get to see them a lot earlier because as soon as theyre pushed through the main labs then theyre uploaded to our account where we can view them :) ]

[visionof-lumen]

on the topic of mobility aids i just want to throw out a non-comprehensive list of tips from someone who's been using mobility aids for 10 years

everyone has different needs and responds differently to certain mobility aids

if a cane isn't right for you, it doesn't mean you shouldn't look into other aids to see if they help

neurological conditions and things like strokes and brain aneurysms can cause someone to struggle with balance for life and are more than welcome to try out mobility aids

it doesn't matter if it's a genetic condition or an injury- consider an aid

wearing braces and using walkers, canes, and so on is very normal after injuries. please use them if you are in pain for a long time after an injury. injuries are serious too

if you buy a cane and it didn't work out for you, you're hurting no one

folding canes are helpful but have a lower weight limit generally speaking

crutches may be a good idea for you if you really struggle with balance and stability

your mileage will vary with each type of aid. you may benefit more from one aid at one time, and more from another in other situations. you may need several different kinds

if you need a rollator, wheelchair or scooter, it really is okay to get or try one. if your insurance won't cover it it's okay to buy or crowdfund one

walkers and rollators require low upper body strength, unless they need to be lifted up on to a curb in which case the user may need assistance

even the lightest and most well constructed wheelchairs are still heavy. they require a lot of upper body strength and mass to propel if you are doing it completely by yourself. you may also need assistance transporting them, getting them up or down hills, on to curbs, and so on

if you struggle to walk for extended periods of time (30+ minutes uninterrupted) you probably need some type of aid. if you have poor balance you may need some type of aid.

you're not hurting anyone if you end up not needing the aids. it's fine to try them

it doesn't matter if the pain or exhaustion or bad balance is related to your weight. you deserve to be as mobile as you want to and can be. its okay for fat people to use mobility aids. it's not embarrassing. being a fat person using a mobility aid in public isn't embarrassing. the people insinuating that are. fat people deserve quality of life

[visionof-lumen]

i love how we do Not try to hide our plurality anymore . like its so funny. no one gives half a shit if we are confused about where we are or what movie we're watching, despite asking that same question every other minute for the past half hour. no one cares that we suddenly hate whatever we're eating mid bite, or that we change preferences seconds after stating what we like/dislike. its just our NORMAL to everyone else.

ohh yeah Sol has memory issues. thats just their thing. yeah sometimes they act like theyre coming out of anesthesia at "random." thats their thing. they also change names & preferences & interests and literally their entire identity within minutes, but thats their thing. yeah, its normal, theyve done it since forever. Thats Their Thing.

our friends know its Just How Sol Acts, our family does too. no one questions anything! even our teachers, before we accepted we were plural, knew it was just how we were.

its how we live, and everyone around us has accepted that . the repetitive questions, confusion, & constant change is just a part of knowing us.

[ ps : yes we've known a few people who were quite mean about it, but we have since grown to not tolerate that and have distanced ourselves from anyone who tries ]

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system, plurals, plural system, & system member, "the others," sysmate, headmate. system & system member/"the others" are the most common !

we all sortof want something unique [ we've seen others use stuff like constellations or bandmates, which is super super cute ] but none of us can consistently use anything we all manage to agree on xP

question 59: what terms do you specifically prefer for reffering to your system and system members? do yall have different preferences?

[visionof-lumen]

context : pulses perspective, & we have did :) plus we have no headspace/innerworld

oops i ranted . tldr : mostly feels like i had a singular blink, sleeping/napping without dreaming, closing my eyes for a few minutes, or watching a twitch stream .

post under the cut is just detailing Exactly what it feels like :PP

its definitely weird. heres examples of ones ive personally experienced within the past month or so !!.

sometimes its time being extremely slow, then suddenly everything snaps like a rubber band & is super fast and then i know almost Nothing of what occurred and im fronting again. everything is unrecognizable when its slow [ try putting a youtube video on the slowest setting, then imagine its even slower. its horrible ], and when its too fast its basically just a blur of colors & sound. very weird and scary 0/10

other times itll be a blink, and then its over. its been hours and i was gone without realizing [ like anesthesia! ]. if we're in our room, i likely wont notice until i realize time has passed, or if an activity has changed. 4/10 chill most of the time cuz it feels smoother than it sounds but NOT when im in a conversation

in others time might get slow [ not as slow as the first example ], then it gets distant, like someone changed the FOV setting in a video game. then itll go back to normal pretty smoothly!. so its kinda like the first one, but without the fast part. still means my perspective of what happened is pretty fucked but its not as bad as the others. 6/10 annoying but not the worst

sometimes, for shorter amounts of time, it'll feel like i closed my eyes & another system member did something while i was "resting" , but it still felt like the same amount of time passed. so, for example, im playing project sekai, and i rest my sore fingers & "close my eyes" mentally , ill wait a few minutes and when i come back to front then therell be a finished song on my screen [ has genuinely happened . fucker got a full combo on our FIRST TRY on expert mode while i wasnt looking 🙄 diabolical ] 0/10 can these fuckers stop playing video games when this happens ITS ALWAYS ON MY SAVES TOO

if its during a fully consensual switch [ so its been agreed upon by me & whoever im switching out with , & we are both aware of when its going to happen ] then its not very distorted at all, its just like im watching whats happening over the fronters shoulder or on a livestream [ so, not in control, but definitely aware ]. things might get a little blurry when im not super focused on whats happening or ill "look away" & not see/feel anything for a while, but after coming back to front its Much MUCH easier to recall the memories & information!! 10/10 yayy its like a twitch vlog/ stream where im one of the only viewers !!!

& i have yelled/made a noise when switching back because it absolutely can be like a fucked up fnaf jumpscare . yes this happened during our school years

how does it feel in your experience to be out of front?

question 47:

[visionof-lumen]

some of us have the default voice, usually frequent fronters who are more used to using the bodys voice. and some have very different voices, usually those who stay out of front [ but are present enough to speak & project their thoughts ]. we can change them on will too :3

Hello, creatures! Do headmate have distinctly different voices, or is it usually more similar to the "default" voice?

question 53:

[visionof-lumen]

Day 4 - Seb board.. board Seb.. Stib orb.. Seb..

📑🪙📂 🐟 x 🌊 Divider 🦈🐚🪢